This is the story of one woman’s courageous struggle against the relentless encroachment of darkness. Helen Harris, after a childhood marked by unplanned clumsiness, skinned knees, and being known as the class klutz, discovered she was a victim of retinitis pigmentosa (RP), a disease causing progressive blindness and having no known cure. Devastated by this prognosis of ever-growing darkness, this brave and stoic young girl determined nonetheless to make the most of her future.

She was galvanized to furious activity, driven by anger at the abysmal absence of knowledge of RP in the medical community and, in fact, this world. But what could one woman do? Plenty. For someone with no experience in business, public relations, volunteerism, or recruitment, Helen Harris undertook to master them all. One lone woman with the mission to move the mountains of ignorance about a disease even Helen had never heard about, all the while trying to cope with the ever-growing darkness surrounding her and her sons. She came to know that RP was one of a family of related genetic diseases, one more terrifying than the other. These diseases, being of genetic origin, often strike multiple siblings in a family.

This book will lead you through Helen’s amazing success in recruiting celebrities to their cause and shedding light into the darkness of RP, involving the medical world in the fight, and garnering support from the political world up to and including a president of the United States. Information on all the new technology that has been developed since Helen’s journey began are enclosed within the pages of the book.

CHAPTER 1 This Is the Book I Needed

With this book, I hope to give the gifts of hope and freedom gained from my own long journey, to the millions of people who have lost eyesight because of retinal degenerative diseases, and to those who love and care for them.

This is the book I wish I had forty years ago as I progressively lost my vision. It took a long time, back then, for doctors to even diagnose why my field of vision was shrinking. Even then, they could not give me a reliable prognosis other than telling me that my loss of eyesight would be irreversible.

I suffer from retinitis pigmentosa (RP). RP really is a group of genetic eye disorders. Rarely diagnosed properly at the onset, RP can start in childhood—as it did with me—with night blindness, then, later, loss of peripheral eyesight, and finally blindness itself. This loss can take years or even decades. Many people may not become legally blind until they reach their forties, but others lose their sight dramatically faster. Progression can differ widely from one individual to another.

Even as my field of vision narrowed, I could still read eye charts in front of me and those through an optometrist’s viewer. During the same time I became legally blind, I still registered as having 20/20 vision!

RP is one of several types of degenerative retinal disorders that afflict tens of millions of Americans, with new cases diagnosed every day. These types include macular degeneration and diabetic retinopathy.

When I was diagnosed, there were virtually no resources and very little information available to help me learn about my illness or what to do about it. Times have changed. I’m proud to say that the foundation I established, RP, played a role with other fine organizations in raising public awareness about retinal degenerative conditions.

Medical science has made strides in understanding and diagnosing these incurable vision-impairing and blinding degenerative retinal disorders affecting tens of millions every day. The search continues to find safe and effective treatments; however, no one can predict accurately when such treatments might be discovered to slow, halt, or reverse vision loss among those afflicted. But cellular and bionic implant research has shown much promise recently.

Nevertheless, we still have a long way to go. We also still lack public information. This is particularly true when it comes to helping those with vision disorders to cope with the very real and daily emotional, social, and physical challenges of living with low vision and loss of eyesight.

Over the years I have shared my experiences and offered information and support to hundreds of fellow sufferers from retinal diseases, as well as providing support for their health care providers, caregivers, and loved ones who have asked my advice by phone, email, or in person. With this book I hope to reach all of them and many, many more.

Most of all, I want to get people to think differently about these diseases. I want people not to think of these diseases solely as tragedies, but as conditions that people can learn to manage and compensate for, and even overcome. In these pages, I will show how sufferers of retinal degenerative diseases can take positive steps to cope successfully with vision impairment and regain control of their lives.

Helen Harris has been a tireless advocate for the blind and vision impaired for the past 40 years as founder of Retinitis Pigmentosa International (RPI), The Vision Awards, and TheatreVision described movies for the blind. Helen has testified before Congress about major issues facing the blind and enlisted the aid of President George H. W. Bush, whom she met at the White House in 1990. She has received the support of major Hollywood directors, producers, and stars including Charlton Heston, Bob Hope, Jon Voight, Sherry Lansing and many others. She commissioned the first medical book written exclusively about retinitis pigmentosa (RP) and has also been responsible for contributions approximating $325 million for research and treatment for RP and other degenerative eye diseases.

Herself a victim of RP, and legally blind for more than 30 years, Helen personally knows all too well the helpless and hopeless feeling of having a disease that is little known, but extremely debilitating. While learning to use the white cane, she sought to “prove to the world” that despite vision problems, she wasn’t “blind” to life. She took up painting, and with only two art lessons, the young homemaker astounded family, friends and her instructor by showing tremendous innate talent. Encouraged, she plunged into painting with a passion.

“Art was tremendous therapy for me in dealing with RP,” Helen notes. “It was a real boost for my self-esteem. As long as I could do something that only a sighted person could do, I didn’t feel quite as handicapped. The harder it became for me to see, the more creative I would get in finding ways around it.”

Helen is also an avid writer, poet and currently working on three other books, including her memoirs.

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